[BN] the know

Hunter’s memory lives on in Day of Hope & Prayer

Jim Kelly bumps fists with Justin Murphy, a member of the Shepherd’s Troupe performance group, Saturday at Hunter’s Day of Hope, as Justin’s parents, Laura and Tim Murphy look on. For a gallery of photos from the event, go to buffalonews.com/galleries. Sharon Cantillon/Buffalo News

Amid the bustle of bounce houses, clowns and children that filled the field house at Ralph Wilson Stadium on Saturday were reminders of a little boy who would have turned 16 last week.

A picture of Hunter Kelly hung above the stage. Magicians dedicated tricks in his honor, and hundreds of people bowed their heads in prayer to celebrate children and remember the son of former Buffalo Bills quarterback Jim Kelly and his wife, Jill.

“Certainly, the most important thing that we’ve learned through Hunter’s life is the power and privilege that we have to pray and to ask God to bless us,” Jill Kelly told the crowd gathered in the Healthy Zone Field House for the 15th annual Hunter’s Day of Hope & Prayer for Children.

The story of Hunter, who died at age 8 in 2005 after living with Krabbe disease far longer than doctors expected, was fresh on the mind of Michelle Cloen of West Seneca as she waited in line with her three children for one of two bounce houses.

“I don’t think people will forget about him for anything,” Cloen said. “And that’s how it should be.”

Cloen said Hunter’s life and the awareness the Hunter’s Hope Foundation has brought to the rare neurodegenerative disorder known as Krabbe disease has made her even more grateful for her own children, Jayle, 6; Maya, 4; and Joey, 3.

That’s the goal of the annual event, which drew an estimated 3,000 to 4,000 people to the field house on Saturday, said Andrea Moran, development director for Hunter’s Hope Foundation.

“It fulfills one of the primary goals of the foundation,” Moran said, “and that’s to encourage parents to just be thankful for their precious gift of children.”

The Hunter’s Hope Foundation raises funds for research and awareness of Krabbe disease and other leukodystrophies. Two states, New York and Missouri, now screen newborns for Krabbe, and the organization is pushing for other states to pass legislation or implement screening procedures, Moran said.

“If you can find something ahead of time, I’m all for it,” said Shannon Piorkowski, a North Tonawanda mother who held her 4-week-old son, Jonah, while her son Isaac, 4, and nephew Aiden Roberts, 6, competed in a football race.

While most of the foundation’s events are fundraisers, Saturday’s was free and offered games, food and entertainment to area children and their families.

Milagros Albarez, of Fredonia, said she was drawn to bring her 3-year-old daughter, Jaden, to the event by its focus on fun and prayer. She said she was inspired by Hunter’s story.

“It’s just such an inspiration,” Albarez said. “Always have hope. Never give up.”